tag:blogger.com,1999:blog-1360795999048759832024-03-13T05:35:45.688-07:00eyeliner and huntington's...Kathy MacDonald's blog about living with Huntinton's Disease -- and eyeliner, of course. Eyeliner makes everything better. And lipstick.kathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-136079599904875983.post-63140527708222045552013-09-25T21:00:00.001-07:002013-09-25T21:00:09.422-07:00the upside of it..rebel with a cause,The been lucky enough to be talking a lot with with Jenny and spending time with Josie.<br />
<br />
Jenny at equinox told me she wished for me is 'when HD makes me fall that with the good karma I have that I bounce right back up'. Good one for the season of balance with my unbalanced body.<br />
<br />
I am blessed with my girls...<br />
<br />
Not allowed to be ditzy anymore Jenny told me. I told her can't help it ( too much stuff in the 60's )whoops always hidden behind . I am smart she told me so I have to believe that.<br />
I did some really dumb things the other day so figured I could blame the HD ..I did.<br />
<br />
Every night I think of all the things I am grateful for I never have a self pity party . Jenny told me I need to no matter how I feel to make sure I walk an extra block or walk a little faster so when there is a cure I'll be in good shape for it. The hardest part of the day is morning I have to force myself to get up..very tired but what can I do ? Switch bodies with someone? Any volunteers out there?<br />
<br />
<br />
The other day Josie ran in a race for HD a fundraiser on a trail in the cold and rain and she placed first! So proud ....I took pics.<br />
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2 things I learned the hard way I shouldn't drink tea at my computer -the other is not to be walking with a bowl of cereal ...Josie told me I need to be in a place with laminate floors she is right.<br />
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The gift of having HD diagnosis means I know what I'm fighting..<br />
<br />
Went to a HD support group starting to get to know the people behind the diagnosis .<br />
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Still happy to have run away from asst living and living with the Bonnie I will never ever go back again .. don't have enough energy to cook so open a lot of tins of things and spend a lot of time at a deli buying soup they make great soup ..also a lot of time at Blenz and Starbucks . Been 8 months I've been in this place it was the right choice ...<br />
<br />
Had a great time with the kids last week Josie had a bonfire at her lot also went out with them for sushi (I hate sushi)..but it was fun to see them..<br />
<br />
very lucky to have them and Jenny and Josie ..and friends and family... blessed <br />
<br />
so peace love to all think that;s all for now<br />
love kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com0tag:blogger.com,1999:blog-136079599904875983.post-53178747636724892012013-07-31T13:49:00.001-07:002013-07-31T13:49:30.841-07:00post Montreal with walker well it seems timely to blog about what's been going on lately ....<br />
<br />
I flew to Mtl courtesy of a friend and had a great time seeing friends and family but was taken aback at how much pain I'm in these days ...I need to accept this is the new normal .<br />
<br />
Robby my sweet little brother picked me up at the airport in Mtl so good to see him after 2 years! He helped me get set up in my hotel room with my computer and all ..<br />
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The next day - very hot and humid - my friend Terry Saba picked me up - we've been friends since we were 4 years old so it 's always special to see her. We have a routine when I'm in Mtl - we go visit our mutual friend's mum (Janice Blue who died of CF at the age of 32) . I get flowers and Terry buys pastries then we go visit her in her little house still the same we;ve been going to for 58 years and for 58 years Mrs Blue with her gentle soul and soft voice opens the door for us.<br />
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The next day I hopped a train with my walker to see my dad - my cousin Eileen picked me up from the train station and took me out for lunch . Then she took me to my dad's he lives on the 21st floor of a building where we had a tornado watch ..I was freaking out a bit . My cousin Tommy then picked me up and drove me to the train station . Got to see quite the lightening show from the train I forgot how incredible the skies can be there . Was in massive pain from sitting on the train for too long.<br />
<br />
On the Sunday Robby picked me up and we headed out to Laval to see Poochie and Doris - Tommy came from Ottawa with smoked meat(to die for ) , St Hubert BBQ, and 2 guitars so he was the man !<br />
Had a great day at the Pownalls , catching up - eating and singing .<br />
<br />
Terry Saba took me to old Mtl to one of my favourite restaurants Jardin Nelson - so lovely there what;s not to love? The same day Glenn Bertie and his daughter and girlfriend<br />
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The second to last day my cousin Pat had organized a gathering for me with her sister Pam , brother Chris, daughter Elizabeth with her adorable son Oz ..that was amazing catching up with my family.<br />
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I was in so much pain I thought I;d leave early ...now Jenny has promised me next summer she's going to be my assistant and drive me every where which would make a huge difference..<br />
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Came home to flowers and card and balloons and a very happy cat - seeing my old home and friends and family in Mtl did my soul good and now I am back in what I guess my new home is ..<br />
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that's it for now kath<br />
<br />kathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com2tag:blogger.com,1999:blog-136079599904875983.post-52113977887815658102013-04-10T21:38:00.001-07:002013-04-10T21:38:38.025-07:00om.......finally at peace..Been too busy to blog moved 2 months ago into an apt - so happy I have Bonnie the brat cat with me -<br />
I can eat what I want when I want - I have a bath tub and gas fireplace - washer -dryer- dishwasher- etc etc...<br />
<br />
When I go to sleep at night it's peaceful and it stays that way-from my living room I'm looking at trees I have lovely verandah - I sit there with Bonnie.<br />
<br />
No more chaos at mealtime - I set the tone for my meals ...<br />
<br />
Since I was diagnosed this is the first time I am truly at peace I needed to have control of my surroundings, sounds and food at asstd living I had none of that . No more locked doors and having to sign out..<br />
<br />
My Dr is a few blocks away - the vet is a few blocks -there's a Starbucks right around the corner- a book store a lovely new market.<br />
I;ve seen lots of Josie and the kids - made Easter dinner for Josie since I moved in lots of love and magic in my kitchen also came out of the broom closet as Jenny words it.<br />
<br />
I;ve been to a HD support group meeting and going to one tomorrow ..it was strange in some ways but great in others.<br />
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The day after I was diagnosed I couldn't drive anymore which was a tough one but I saw my car the other day parked down the street here..including the dents I put on it!!Whoops .......<br />
In one way I felt bad I miss driving like crazy on the other hand I thought I'm lucky I'm out of asstd living and I live in a beautiful bldg- I have my cat so I can't complain...<br />
<br />
A few times a week I have help doing things here - oh and I have an electric wheelchair still a little afraid of it...<br />
Looking forward to when Jenny moves up here too I miss her so much ....<br />
<br />
that;s it for now<br />
kath<br />
<br />
<br />
<br />
I have wokathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com0tag:blogger.com,1999:blog-136079599904875983.post-17019222015271282452012-12-20T23:41:00.002-08:002012-12-20T23:41:34.834-08:00haven't blogged for awhileI think things are taking longer than in my old world . I swear it's true was taking to Lynn tonight about something this winter she said that's 2 months away I said 'not when you have HD.'<br />
<br />
ok I 'm really trying to once again be positive but things happen today a woman in the drug store was sighing impatiently looking at her list and not able to find the item in that aisle I felt like saying to her<br />
'you know what hard is ? Pushing a walker not allowed to drive being fitted for a wheelchair in 2 weeks, living with a bunch of old farts at asst living , not being able to cook and so on.<br />
<br />
Anyhow Jenny can't come for Christmas but I know she'll be here next year for sure..my little minou ..that girl and I can power shop like you wouldn't believe..<br />
<br />
Christmas eve bringing my guitar to Josie;s new house - sing with the kids and Josie is making the big meal then for us. The next day going over early when the kids open their gifts ..<br />
We're making new memories for the kids and this first Christmas without their granddad I want to fill the empty pockets in their hearts with love , music and new memories .<br />
<br />
Went to the HD clinic with Josie 2 weeks ago - 3 hours of questions and tests. I 've lost 7 pounds they wanted to know why I said because the food at asst living is terrible..:) They didn't laugh.<br />
The good news is that they think they'll have gene cell therapy 5 years down the road.. I have to stay healthy but still no cures yet.. <br />
<br />
Went to watch the kids in a Christmas concert at their school yesterday so sweet their little faces and voices love this time of year the magic - the music the kids excitement. had lots of unexpected treats and visitors ..Thanks Linda (candy) and Lynnie(haven;t opened it yet) and liz...(haven't opened it yet)..<br />
<br />
The thing I find hard is the pain - all night I dream I'm in pain then I tell myself to wake up - I won't be in pain but when I wake up I am - hard to deal with.<br />
<br />
That's it for now as always am very grateful for my family and friends and even strangers who smile and say hello. I am thankful I may not be able to cook anymore but I can still enjoy food , the amazing clouds we see out West here, that I have 2 daughters and 2 grandchildren more precious than anything.. I love them so very much. I get to see Bonnie everyday but still plan on getting an apt with her.<br />
I am so thankful I can move my arms and read a book and pat Bonnie and hug my grandkids(not in public they tell me ) we all love each other I am blessed<br />
Kath<br />
<br />
<br />
<br />
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<br />kathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com0tag:blogger.com,1999:blog-136079599904875983.post-43121888595959174252012-09-23T20:58:00.002-07:002012-09-23T20:58:59.332-07:00the future'' Josie had been telling me I could easily have a few more decades(without loosing my marbles) but I thought she was just feeling sorry for me and not telling me the truth but then I met up with Amanda's lovely mum in law who said the same thing. That was also her instinct and she's know and worked with people who have it. She a psych nurse in TO ...so......<br />
<br />
<br />
<blockquote style="font-family: Helvetica;" type="cite">
<div>
believe I will have a few good decades ahead so I think I will go back to using </div>
</blockquote>
<blockquote style="font-family: Helvetica;" type="cite">
<div>
anti aging cream:)<br />and sun block<br /><br />and not ever start smoking<br /><br />and eat really good for me food<br /><br />and have a calm food enviroment and try to elinimate as much stress as I can<br />also that book you bought me Jenny it really is encouraging me to have as they less stress better food<br />thanks<br /><br />and do my dammnest to have Bonnie with me every day<br /><br /><br />and buy uggs that I will outlive<br /><br /><br />love you guys very much thank you for being my daughters<br /><br />love mum</div>
</blockquote>
This is what I emailed them the other day Jenny said it would make a good blog .<br />
I finished the book about HD called 'The woman who walked into the sea.' Written by Alice Wexler' it really helped me to understand the history of it and to wear the badge of HD as a blessing . The twitches I have she writes about .<br />
<br />
The last paragraph from the book she writes...<br />
<br />
Milwaukee, HD Society of American annual convention, 2007<br />
See that willowy young woman in a bright red dress and matching lipstick who dances already showing the twitches and grimaces of early HD:the grey haired woman jerking back and forth in her wheelchair, arms flying , head flopping; and that skinny young man in the backward baseball cap who shimmies and shakes out on the dance floor as if he doesn't have a care in the world, who at the age of 18 found out that he has the abnormal Huntington's gene and carries this knowledge with grace and strength . As we dance this dance of St Vitus, this double dance of illness and of cure, the movement of chorea blend with those of hip hop, salsa and rock and roll. Later when I am no longer surrounded by people with Huntington's I look at the still bodies near me -and- for an instant- I find something is missing.<br />
<br />
whoops meant to put that part by Alice Wexler in quotes but for some reason my computer is arguing with me<br />
that it's for now<br />
peace and love to you all<br />
Kath<br />
kathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com0tag:blogger.com,1999:blog-136079599904875983.post-89103053378908327202012-09-03T22:52:00.001-07:002012-09-03T22:52:32.631-07:00what a month lots of challengesnot only of the HD kind but the normal(normal ? what's normal when you have HD?)<br />
<br />
Went to the swallowing clinic and speech therapy at UBC I was hoping they'd be giving me some new exercises I could use when my brain and lips aren't working together . They said no it's just the progression of this disease . They did test my swallowing different things and gave me advice for meals and how to avoid choking.<br />
They did say again that even when I can't talk I'll still be able to sing so that is very cool.<br />
<br />
<br />
Emotionally had some challenges this month ..need to keep the positive stuff going I do want to live as long as I can so I need to surround myself with good stuff<br />
<br />
I think the blue moon must have impacted the people here too lots of craziness this last week..<br />
<br />
David passed away<br />
we all said good by to David - in different ways---- it was very hard he was such a healthy vital man who enjoyed life and for him to suffer the way he did seem so very wrong.<br />
<br />
as always I am blown away by the kindness of friends and family<br />
<br />
I have to keep my eye on good stuff not the things that do impact me but hanging on for a cure so I can drive again and have a life again. All I know is that I do the best I can to hang in there...<br />
<br />
I want to learn more songs, eat more muffins , laugh with my grandchildren , learn how to crochet, go out for coffee with friends, going to Mtl next summer so I have a goal to stay as healthy as I can<br />
<br />
thanks again for all the kindness and good thoughts<br />
love you all<br />
Kath<br />
<br />kathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com2tag:blogger.com,1999:blog-136079599904875983.post-21584098728237148022012-07-12T13:10:00.002-07:002012-07-12T13:14:16.382-07:00the HD seems to be creating multiple one liners ...I ;ll get to those in a bit<br />
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I've been getting adjusted to living here at kin village - the people are all great who work here - most of the people who live here are good people but a few make me weary -the whiners and the loonies.<br />
The food I will never get used to but the thing that really get me is how much I still miss Bonnie.<br />
<br />
I see her every day for a few hours and that is still not the same and when we live together .<br />
I miss having her do things to make me laugh as laughter is a bit on the thin side here.<br />
I miss how she jumps on my keyboard when I 'm on the computer .<br />
I miss how she sits on the kitchen table watching me eat and how she waits til I've just gone to sleep before she jumps on the bed and startles me then curls up in my armpit.<br />
She's a rescue cat and the first few nights she slept with me she had her 2 paws around my wrist all night and didn't let go..<br />
Now she likes Keith and Josie and the kids but I guess she's a one woman cat ...<br />
<br />
I had the nurse from Delta --she is really cool she's a MacDonald- she brought me hope and a hug and smile which I can always use.<br />
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ok one liners courtesy of my HD whacked out brain......<br />
<br />
I fell into a wall the other day I looked at Keith and said 'it's just one bruise after another.'<br />
<br />
trying to figure something out the other day at the lawyers I said 'I think I have a black hole in my brain.'<br />
<br />
the leading cause of death with HD is trauma to the head when Jenny was here about 6 weeks ago I was hanging crookedly onto her onto her arm to walk to the car. I said to her 'is the leading cause o death trauma to the head because the family gets fed up and gives them a little shove.?<br />
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the other night I was looking in the mirror before I went to sleep and I said to myself 'I'm going to miss you when I 'm gone'. ok that cracked me up<br />
guess I like my own company...<br />
<br />
also I was wondering if God laughs at jokes<br />
<br />
I realized playing guitar was hurting too much =- so I grabbed my autoharp and I dropped it so instead of doing damage to my autoharp I'll stick to the guitar.<br />
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Josie sang with me at asstd living last week for the other inmates -- so nice to sing with her again<br />
I was listening to Cradle hill by the Once and thought that would a perfect funeral song(mine) so I called Jenny she agreed it's a good idea so somehow I record this and get all my family and friends on it then ..also I like Jenny Lindbo "redbird ' song...<br />
Guess I have more than one but I want to sing them now is that so diva-ish of me?<br />
So have to figure out recording me then get my girls and grandkids, Peter Little and the gang from Kathy's kitchen , Bryan Leckie, Lynn, Jeannie, Tim Harrison (?) would you ? sing with me mean?<br />
<br />
I am still the same old Kath just living in a different body<br />
hmm<br />
deep like the ocean<br />
I still believe in the goodness in life my friends and family, laughter muffins and music and good old cup of tea<br />
Kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com3tag:blogger.com,1999:blog-136079599904875983.post-19075250210391149262012-05-12T19:53:00.002-07:002012-05-12T19:53:41.046-07:00times does fly when you have HDI think maybe I should count my life in dog years . I know I'm worse than I was last year and I have no idea how I'll be next summer so I think from now on I'll count my life in dog years.<br />
<br />
Went to the HD clinic for another assessment this week - they checked my brain and my meds and my walking. I had to walk one foot in front of the other well I don't think even real people can do that it was tricky. I learned a few things like when you have this the singing part of my brain will be the last to go. That made me happy I mean if I have to have something when everything else has gone I'll still be able to sing to my daughters and my grandchildren.<br />
One thing that bothered me quite a bit is seeing a woman there who doesn't use a walker or live in assisted living she lives alone near here and according to her friend sits home alone each day and feels sorry for herself and cries . The woman had the googly eyes you get with this, was very skinny and I couldn't understand a word she was saying . It scared me - I know at some point I'll end up like that but what I was thinking was who will visit me ? If I look too scary I can still hear and understand so I'm hoping my friends and family will still visit me.<br />
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Been settling into life at assisted living getting used to the quirks of everyone who live and work here and getting used to talking loudly. Some days I am quite spilling with my food (crackers went flying up my sleeve the other day) I said to every one guess I can';t say 'nothing up my sleeve' because there are crackers.<br />
I dread the change of season -it means white shirts and pants and I'll make a mess of no doubt I seem to be having a lot of trouble getting the fork from the plate to my mouth without the food falling off. Though I like to live dangerously and so will eat carefully this season:)<br />
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I still make a lot of HD humour jokes and I think that as long as I can keep a smile on my face and love in my heart and a muffin and cup of tea, see my friends and family I am a very lucky woman ..<br />
<br />
<br />
Now that Keith is nearby he picks me up so I can see Bonnie every day and he's been helping me do all the things I was having such a hard time with like getting groceries or watching the kids do their activities. What a big relief ....<br />
<br />
that's all for now<br />
Kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com3tag:blogger.com,1999:blog-136079599904875983.post-75922079127258857962012-03-28T00:08:00.000-07:002012-03-28T00:08:10.344-07:00again been way too busy to blogthis moving and pushing a walker back and forth, making sure Bonnie is ok and packing and unpacking and all the details that moving involve compounded by doing everything with a walker instead of a car.<br />
<br />
I had friends and family help out and I'm almost done packing at the old apt....down to 5 hours of stuff left. Still have to do all the calls too ...that involve moving( like tomorrow - calling telus to give them hell for charging me for the next month when I had called twice to cancel.<br />
Also they want me to lug all the shiny boxes and little black things and the remotes to the post office of course! A piece of cake when have a walker!<br />
SO that I 'm getting my friend Amanda to help me with that on Thursday and a few other scary things I can't handle on my own.<br />
My friend Helen is here right now with Bonnie and she is doing so many things to help me including driving me to Ladner to get a microwave I need to take to PR.<br />
In the meantime I have to eat my words from my last blog -- I was really having a hard time my first here was frightening and lonely. I kept seeing Bonnie in the shadows .<br />
Well assisted living as it turns out is like staying at a hotel - they make my meals, my bed and check on me every morning and night . The aides and nurses are really kind and I like 99% of the people here.<br />
I must be getting used to the food because I east every scrap -always hungry too with the HD.<br />
It's almost like a hotel except they don't chocolates on the bed !<br />
The other night I was sick I walked down to where the nurse is and had a chat with her - I really feel safe here.<br />
<br />
I sit at a table with 3 other women well it turns out they are sweet ladies - they are they look me in the eye and have love in theirs like mums to me . My mum has been gone 32 years now and these women say to things like 'make sure you take a taxi it's too cold out .' They're all hard of hearing and some have altered taste buds so some of the conversations are like this ' what is the soup like ... I don't know what I'm doing later ...no the soup ...oh it tastes like beets well it's actually dessert it's strawberries...' and so on I make sure if they care to tell them what they're actually eating .<br />
The fellows at the next table are the loud ones I warned them I have supersonic hearing and can hear everything- they said 'well be better tone this down' but they forget.<br />
The old lady next door to me is 97 and has been teaching Tai Chi for 30 years - she is amazing no walker - great posture and she;s teaching me in the hall every morning .<br />
Now this week moving to PR for 2 weeks with the Bonnie til Keith gets up here....that's why I'm frantically packing in my old place .<br />
Josie has arranged for movers and is staying at my old apt while they get my furniture loaded up on a truck and I 'll Bonnie for a few hours here til they are ready to drive to PR that's when she and I will be in this lovely cosy home the painters are painting like crazy right now Josie also arranged.<br />
My goal after Keith gets up here( can't wait Keith for you to see the house ) is to stay healthy til there's a cure. <br />
In the meantime I don't have to stress about getting groceries in my walker - Keith will be living in our place with the Bonnie, I;ll be living here in assisted living . I do understand now why my Dr and Josie recommended it - it's good for someone like me who really does need help but not so much and I feel this huge wave of support from the people who live and work here.<br />
So far Lynnie - you did a great job of packing thank you much. Down to last 20 boxes and I always get panicky when I think I can't finish but I always do.<br />
<br />
Helen is taking me to PR tomorrow to get do some errands with me and I want to show her a few things she's never been to PR I think she'll like it.<br />
Jenny is settling into her new little apt and posted a sweet youtube video of her deaf cat knocking things over and Jenny is giggling in the background she has no idea how that does my heart good to hear her voice. I am very proud of my girls and love them and my grandchildren very much.<br />
Can't wait for the first time we hook up in PR - I can stay there very limited time because Assisted living guidelines but I love that place so much it does my heart good.<br />
Oh and in my usual black humour I said to Keith last night..I haven't changed much,;' hahahaha right<br />
Even the fellow at London drug s today said he noticed a diff after only a few months.<br />
SO folks even tho I';m on a slippery slope lets hope theres lots of laughter and love and music and kindness and ice cream and my cat ..<br />
The women who work and lived here have certainly made that difference...<br />
It's all been amazing really<br />
that's all for now I am so danged tired<br />
<br />
kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com2tag:blogger.com,1999:blog-136079599904875983.post-14308305152575174022012-03-03T13:11:00.000-08:002012-03-03T13:11:57.001-08:00honey I wish I wasn't homewell I didn't know I could cry so hard and my first night here. After a long day having to get up at 7 to pack some last minute things I moved into here.<br />
Josie had been here since 9 for me setting up my furniture and making my bed all nice and cosy and so on putting my (way too m any ) clothes in the closet.<br />
I had my first lunch here, sitting with a few 90 year olds. Canned veggies and white pasta . The women were nice but still not what I thought I'd be lunching at the age of 61 and yes I am the youngest mostly women in their 80's and nineties. Some of them even if I smile at them they ignore me and others very sweet .<br />
I unpacked a few boxes went in to dinner(canned veggies and white rice) one of the workers was yelling at the 90 year old woman at my table .That did not sit well with me I asked her if this was how she normally operated and she said yes. Seeing as I had only been here a few hours I was tentative to say anything but next time I hear her yell at anyone I'll give her hell.<br />
I went to my room and realized there was no Bonnie to curl up with I started crying and called jenny and Josie they both called the nurse to come and check on me . Gee even the nurse can't help my sad heart.<br />
I had to get up early yesterday morning for the man who was setting up the cable for my computer and tv . He was such a help and was moving some furniture around for me to make it easier. He also unwound my bag of massively knotted wires. I meant to but didn't have time he was so patient with it but understood how that really helped me as his dad has Parkinson's . I am trying to set him up with Josie so got his phone number - he seems like he has a very kind heart. He's going to help me set up my dvd and vcr when I bring them over so will make sure Josie's here :)<br />
I am very very tired from this move still have a lot of unpacking to do . I was starting to have another meltdown last night and my friend Linda came over and talked with me gave me advice.<br />
She's a gem.<br />
Talking to Jenny right now -- she is dealing with a lot also - I have great faith in her wisdom on her path in life.<br />
Feeling lousy today but still want to go see Bonnie I"ll take a bus boy do I miss driving .<br />
When I arrived yesterday the first thing she did was jump on my walker and I pushed her up and down the hallway.<br />
Then I curled up on the bed my cat at my feet she gave a great sigh and fell asleep.<br />
<br />
Just had lunch with 2 of the only fellows I've seen here - and a woman who had a stroke and at least had a few laughs - turned our place mats into paper airplanes and threw them at each other.<br />
Yep good thing I actually had a good life .<br />
I asked the fellows could I sit with them for dinner they aren't as serious as the other women I sat with and I need all the laughs I can get .<br />
Having pain today too but have to walk to the bus to go see Bonnie<br />
well that;s all for now<br />
<br />
Kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com3tag:blogger.com,1999:blog-136079599904875983.post-58804595395049371252012-02-03T17:12:00.000-08:002012-02-03T17:12:02.711-08:00the no name blog and feisty attitudesnow that made me laugh for some reason (small things amuse small minds ) or maybe it's the HD attitude 'take advantage of this opportunity to laugh it may not pass by too soon again.'<br />
<br />
I am looking at everything around my place that has to be sorted and packed - very confusing at the best of times. I have to go through everything and I mean everything, bins of sheets, clothes I made for the kids when they were little, recipes, music, paint, patterns, frames ......get the picture? Not to mention the abundance of clothes. I am mildly ADD but just enough that I'd rather do anything than sort through stuff I have a hard time reaching.<br />
So that;s why I took my walker for a walk, got a salted caramel hot chocolate sat outside Starbucks with my book, patting strangers dogs.<br />
<br />
Yes I'm still happy to be alive still happy I can walk still happy about everything except the thought of sorting. I wish I had a twin who do things like that for me . I have crazy waves of fatigue it feels sometimes like my brain is detaching itself from my body. I will not let this disease beat me as far as attitude goes . I've always been an observer and as a child I'd watch women who had nothing to complain a bout but would make great dramas. Then there the mothers (like mine and Mrs Blue) who were lovely feisty gentle souls. No matter what happened to them they were strong and kept going. Also my grans had rough lives but they never complained . I look at my daughters who are going through pretty brutal times right now . They haven't given up they keep going , my granddaughter as well.<br />
I look at my grandson always a smile on his face, he's a gift too.<br />
I am so lucky to have my family all of them even when they tick me off (well I do have walker rage according to Josie) but that's ok..<br />
I'd rather be out having walker rage than curled up defeated on the sofa feeling sorry for myself.<br />
Well the only time I have walker rage is when someone beeps at me to hurry up .<br />
I look around and would still rather be me than someone else- I love my friends and family and feel that support and love lifting me all the time...and I am thankful<br />
that's it for now<br />
kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com1tag:blogger.com,1999:blog-136079599904875983.post-8081878153766889382012-01-22T23:38:00.000-08:002012-01-22T23:38:22.052-08:00well I've been thinking...the one thing that (aside from being able to bring Bonnie my delightful cat ) that was bothering me was that I wouldn't be able to create things from nothing.<br />
<br />
When I was in high school remember the excitement of forming a folk group, organizing a coffee house at RHS ,creating a fashion show to raise $ for the choir to go to new York. I just walked into a trendy boutique in Alexis Nihon and asked if I could borrow their clothes for a good cause.<br />
When I explained why they thought I had a lot of guts so asked me to work there part time(I was 16 or 17 at the time) during one of the fashion shows I organized for them National film board asked me if I would do the same for them they wanted to do a documentary on models in the 60's . So I played the role of fashion coordinator and was the FC for that film. It was shown in theatres that summer.<br />
When I moved to Owen Sound I created a choir of neighbourhood kids, then moved to NB where I created a choir of teens....then I moved back to OS and created amongst other things "Bread and Roses' coffee house to raise $ for the women's crisis centre, a few different groups all with Peter Little my musical buddy, including Kathy's kitchen .<br />
<br />
Even when I was living in Nanaimo I had nobody to walk with so I created a group we met every day for almost 5 years.<br />
I had been feeling at such a great loss thinking what the heck I'm too young to be doing nothing with my creative brain and I didn't want to lose my spark for life.<br />
Well between what my daughters said and a friend Ruth said a light finally went off in my brain. Guess I had to hear it 3 different ways(my perfect excuse I have HD and it takes time to sink in) so Ruth said to not get rid of my craft supplies etc she said maybe I can teach a class in crafting or guitar or just sing and I will for sure start a Scrabble group there (there is none) well this is all assuming I'll be allowed to do this so hope it all works out for me then that creative part of my brain and that side of my spirit that needs to create all will be sparking along quite nicely.<br />
Thanks again everyone for the support and friendship and love, as well as that group of women I connect with every day and they have listened to me moan about this disease at the start they've been wonderful too as well as my real life family and friends.<br />
peace , lovekathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com1tag:blogger.com,1999:blog-136079599904875983.post-31163149913982008592012-01-21T19:36:00.000-08:002012-01-21T19:36:40.586-08:00things move quicklyin my little world --3 months ago I found out I have HD. Things just keep moving too quickly, one day I'm driving the next I'm looking at assisted living places or so it seems.<br />
<br />
I'm supposed to be getting prepared to move into assisted living but I've changed my mind. I don't want to live where you can't have animals or have a bath. I don't want HD>><br />
Had a meltdown on my bd --cried and cried for ages I guess I'm allowed hadn;t done it yet since I was diagnosed. Both my daughters do their best to be supportive in different ways. And Keith thanks for bearing the brunt of my fed-up ness.<br />
<br />
Is that not too much to ask of the universe when I am only 61?<br />
Had to get groceries yesterday in the snow trust me walkers and snow don't get along hard to push when they're empty never mind full. I used to complain about walking and driving in slush it;'s even harder to push a walker.<br />
<br />
Sometimes I'm ok about this and can accept it whatever 'it' is . I wish though my DRs had some sort of answer or treatment or could say 'this is how it will go' it;s all the question marks that I wish had answers.<br />
All I know is that I will at some point deteriorate but I don't know if it's going to be next week or 10 years from now. I wanted to be an 85 year old woman, still singing and baking and driving and have a dog and now my world is shrinking.<br />
Still putting on the eyeliner and lipstick and still laugh at myself when I'm not crying -oh and someone in the slush and snow yesterday I was trying to walk to a taxi and a fellow in a white van yelled at the taxi driver for stopping where he did for me. I was so fed up and mad at people who don't have patience or honk at me so I banged on the side of his van and yelled 'kiss my ass,;'<br />
Maybe I need to get that as a tattoo with 'kiss my ass; and just show that instead, on my wrist maybe.<br />
I'm not sure how it would go over in the nursing home:)<br />
At least I still have a sense of humour such as it is<br />
Jenny told me I needed to blog but this blog sounds confused which is what I am I guess<br />
kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com2tag:blogger.com,1999:blog-136079599904875983.post-15172596651498344972011-12-15T20:41:00.000-08:002011-12-15T20:41:06.907-08:00Is it just me or is it all of us with HD?Time seems to go differently. It's as if when I do something that takes 3 hours it feels more like 6 ...very s-l-o-w------------------so I will now say I live on HD time :)<br />
<br />
I had to do a few different things today, dentist etc but pushing a walker does slow me down or is the HD o r is it the lack of sleep from my body constantly moving.<br />
Or maybe it's a combination of it all.<br />
<br />
Also today when I was crossing at a red light I was so slow the light changed before I got to the other side so a man in a van honked his horn at me. I really was shocked here I am doing the best I can a big smile on my face so when I turned to see him telling me hurry up I said with a smile 'kiss my ass'.<br />
I will not put an Irish curse on him I will not put on Irish curse on him---Jenny warned me but I was mad.<br />
Also I'm wondering what the luck of the Irish is- it seems to me not so good...<br />
Really glad Carmen taught me how to knit it is keeping me sane.<br />
<br />
I got a Christmas card from my friend Jan in OS today - she suggested not buying any glass - my brother also suggested getting elbow pads and have paper dishes. Thanks I will take that under consideration.<br />
<br />
Today when I was getting groceries though I was reaching on to the shelf on the freezer, sent a few things flying so I reached for them and smucked my face so hard on the glass door my glasses pushed into my eye ball so I couldn't see out them on the one side..<br />
Good thing I can laugh at myself ..<br />
Looking forward to having Jenny here next week<br />
She'll protect me from the man in the van and the glass door in Thrifty;'s<br />
that's all for now<br />
Kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com5tag:blogger.com,1999:blog-136079599904875983.post-79737780538335079272011-12-06T18:02:00.000-08:002011-12-06T18:02:01.649-08:00candy canes, crappy days and magicOk I was feeling sorry for myself today - had muscle and joint pain and the normal HD stuff like not being allowed to drive .....<br />
My cousin called I said ok I'm having a rough day she said well everyone has days like that (really?!)<br />
I said but I have 3 things today going on with my health and I have to go do some errands in 2 degree weather and not being able to drive........<br />
<br />
So I dropped off cat food Bonnie the brat cat can't eat to Bosleys for them to give to the needy animals.<br />
Then I picked up a parcel ---thank you Maureen----<br />
Then I went to the grocery store to pick up a few things and while I was in there somehow with this HD things go flying out of my hands like the little basket-not even sure how I do things like that.<br />
I walked down the aisles somehow with the walker the little yellow basket from Thriftys on the seat of the walker.<br />
After I emptied the groceries onto the counter I went to put the basket down but it went flying out of my hand and landed on the man in line behind me. I said 'sorry' but I don't think he heard.<br />
Oh well maybe there should be special HD shopping hours where it's acceptable to knock things over and drop things.<br />
Last week I saw the as the woman at the assisted living place put it 'I'd be lucky(!) to get assisted living room. It was like a cell - but maybe worse than a cell just a narrow cot, counter, microwave, bathroom that's it no room for anything else.<br />
<br />
Anyhow today as I was walking back from the store feeling very sorry for myself a bus slowed down beside me . I was cold, wet , achy, tired I was thinking strange the bus is slowing down there;s no stop for half a block. I turned to look at it and there were lights flashing all over it - instead of 601 it said 'merry Christmas' the bus driver was dressed like a reindeer and as the door opened Mr and Mrs Santa reached out to me and passed me a candy and said 'Merry Christmas'..<br />
I just about cried - I was touched(well even more touched than I was before ) ok now I do believe in Santa and hope and magic.<br />
As always my journey is made so much easier surrounded with love and support of my friends and family<br />
Kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com4tag:blogger.com,1999:blog-136079599904875983.post-66961297626024420942011-11-26T23:15:00.000-08:002011-11-26T23:15:26.118-08:00lists lists and multi-taskingWas talking to my friend Noreen the other night and I was telling her I was trying to figure out which list to cross off first, the Christmas list or my bucket list...<br />
<br />
Also it's impossible to hold an umbrella while you're pushing a walker and flirt....actually there is no way to hold an umbrella so I realized why all the old people pushing walkers in the rain don't look too happy cause their groceries and they are wet.<br />
<br />
Every day it seems there are new challenges- today was lets see how many groceries then glasses I can drop.<br />
I guess this is normal for me now. When I'm at the store I drop my purse a few times, send things flying around me .<br />
<br />
Today after I walked my groceries home I was putting yogurt in the fridge and somehow dropped it on bottom door tray breaking it and sending everything flying that had been in there. Then was putting my dishes away when a few dropped out of the cupboard and somehow smashed everywhere on the counters right into Bonnie's food and water on all the clean dishes in the dishwasher, on pretty much everything.<br />
After I got that cleaned up I was just looking at the floor and started to turn and somehow landed on my back in front of the door with my arm behind my back. I knew Josie was coming back in 2 hours but it really scared me til I was able to get up .<br />
Shaken me up is what it did I guess.<br />
So after all breaking and dropping of things and falling I guess I am ready to go into assisted living but I really want the one that has the ice cream bar.. the one I hope to get into I go see on Monday.<br />
Then I get assessed by a physio this week as well.<br />
Every day I get I have to learn how to roll with the punches and adapt to new challenges.<br />
I guess what I used to be able to do, drive, drink a coffee, talk , sing I have to do this with a walker....<br />
Multi tasking for the HD challenged:)<br />
I'm sorry I still make myself laugh<br />
Still haven't had a meltdown yet(just wait it should be a mighty grand one)<br />
I'm 3 weeks behind on my Christmas list and I think I'll skip the bucket list for another day.<br />
I need to get cracking on all the knitting I'm supposed to be doing but this darned walking to the store for groceries takes up time.<br />
that;s it for now<br />
Kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com4tag:blogger.com,1999:blog-136079599904875983.post-8513178849718777472011-11-14T21:46:00.000-08:002011-11-14T21:46:56.476-08:00walkers , wind and getting lostIWell I'm still using the borrowed one and getting used to navigating curbs and doors that don't have an automatic opener and finding there are certain things someone with HD can't do like open a door with walker and holding a coffee:)<br />
<br />
I was feeling a little sorry for myself last week and really wanted to go to a craft fair downtown Vancouver.<br />
I really don't know Vancouver at all. I mean if it was downtown Mtl or Victoria no problem but I don't think I've ever been 'downtown' never mind on a bus with a walker.<br />
So I get ready, credit card, eye liner, book(hurry up Judi I'm waiting for the next one), yarn, lipstick, loonies and toonies for the bus, fabric bags to fill with goodies I planned on buying.<br />
Check.....<br />
I go down the street to the bus got in front of the bus he yelled 'back up ' I thought he didn't want the walker on it so I turned around and the woman behind me said he needs room for the ramp.<br />
Well I didn't know I've only been using this walker for a few weeks and in my previous life I had a car dammit.<br />
I got on the bus sat up from with the other old folks and students who are too lazy too walk to the back of the bus. Got off the bus a little frightening when the ramp moves but shoot I 've had enough taken I really want some independence so I kept at it.<br />
One thing I forgot was that in any part of Vancouver just don't ask where something is because you'll either hear 'no English' or they say '10 blocks that way' and the next person says '10 blocks this way.'<br />
The other thing I forgot was my map of downtown Van.<br />
I got off the sky train feeling like an adventuress - downtown all by myself.<br />
It only took 20 minutes to find the Convention centre - but actually entering when you're in a walker is another story. Walkers don't work on escalators so a nice fellow who worked there said 'take elevator 2 to the 3rd floor, get off go down the corridor to another elevator then get off on the expo floor.'<br />
Now because I have HD my little brain freezes when I hear too many words like that that don't even make sense.<br />
I saw some other people heading towards the elevator so I asked if they were going to the Craft fair , they said yes so I followed them.<br />
Had a great time met up with Carmen and John and picked up a few things - over 250 crafters from all across Canada even met up with some people from Mtl.<br />
Poor John rolled some yarn for me that my cat tried to eat.<br />
<br />
One big bonus with having a walker is getting the big clean bathroom stall -yippee -who knew?<br />
Coming home I got so lost I walked around absolutely exhausted trying to find the sky train station. I ended up walking for about 40 minutes -only one person would help me she was in a wheelchair and said 'follow me' which was tricky she was going quickly in that things and I was so tired had to run with the walker to keep up to her . At one point I thought maybe she's taking me to her gang and they'll murder me but I was so tired I didn't care - by then it was dark and none of the streets were family.<br />
Finally we found the sky train station - I got on it was rush hour and yes most of the seats were taken by men and listen when you're tired with HD and clinging to the walker and the rail it's hard. I glared at a man and said ' I need to sit.'<br />
Got on the bus to come home and the bus driver pushed the button to let the ramp down - it didn't work so he carried my walker down and very gently helped down the steps of the bus.<br />
Beween that day and the next day - I thought I'd walk m y walker to get some groceries but forgot to check that we were having a wind warning 100 km here in Tssawwassen !!<br />
I was wondering why I was having to push the walker down with all my weight...<br />
Days like that you wonder why you put eyeliner on the wind just blows it off.<br />
I mean it makes your eyes water with 100 km winds ....<br />
When I get my new walker I have to figure out a way to have a coffee cup holder my shaky H hand has been spilling way too many ..<br />
I think that's it for now<br />
Kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com5tag:blogger.com,1999:blog-136079599904875983.post-14896409180328868252011-11-05T18:02:00.000-07:002011-11-05T18:02:48.421-07:00rambling about luck with the walker and lipstickI have a borrowed one until my real - fancy - walker that will be easier to match clothes and lipstick with.<br />
It creates a whole other issue for shops that don't have automatic door buttons like the little boutiques I like to shop in.<br />
I try to always think of things to be grateful for but been having a hard time with this HD....but I think I figured a few out.<br />
<br />
Now how lucky am I that not only is the grocery store and drugstore within walking distance but the boutique where I like to buy gifts, a clothing boutique, bookstore, Starbucks so I will have all sorts of new adventures with my walker .<br />
<br />
Another thing I'm very grateful for is not having to deal with changing the clock in my car when it's fall back time :)!! I just used to leave it but could never remember if it was ahead or behind.<br />
<br />
Another thing I'm grateful for is the fact that winter is coming so when I walk home from the store with ice cream it won't melt..<br />
<br />
Funny having 'something wrong ' seems to bring out the best and worst in people - lucky for me that 99 % of the people around me are amazing - supportive and kind ...<br />
so I sam truly grateful for that<br />
<br />
Kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com4tag:blogger.com,1999:blog-136079599904875983.post-75968077377866714412011-11-03T12:42:00.000-07:002011-11-03T12:42:18.374-07:00walkers and lipstickStill not sure I want this HD - had to walk up to the ins co where I get my car ins with my plates.<br />
Sad day for sure it's hard too to take plates off with HD..:)<br />
<br />
My car looks odd without the plates and then I had to empty the car. I've had this car since Kerri was a baby and I'd drive over from Nanaimo to see her and Keegan.I have 7 years worth of cds, cds that have fallen apart , inserts that have fallen out, blankets, shoes, one glove. batteries Josie asked me to take to the recycling place, 2 old lamps been meaning to get new shades for them, extension cords, 2 bags of rocks to paint on, hats, pens, dead candies, old blood tests I never went for, maps, grocery lists, too many of those, straws, a lighter from my smoking days, 2 chairs, my yoga mat I think that;s it.<br />
<br />
Josie and someone else came this morning to fit me for a walker so now I have one on order called 'xpresso---cappuchino colour.'<br />
They left one here for me to use til the other one arrives well geez I 'd rather have my car back.<br />
The thing I hate the most is not being able to relax at night when I sit on the sofa and watch tv and knit my legs and body jerk around and it drives me crazy.<br />
That's all for now<br />
Kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com3tag:blogger.com,1999:blog-136079599904875983.post-56452736555486996132011-10-29T14:56:00.000-07:002011-10-29T14:56:51.300-07:00after the clinicat the clinic they tested my brain and my walking over and over I finally said 'my brain is too tired I need a rest'<br />
I had to learn to accept this that I have it and that they didn't make a mistake and that I really can't drive.<br />
I said ok fine I'll put a big "h" on my forehead as I was too embarrassed before when my walking was off or when I'll fall into the car. Now I proudly say 'I have Huntington's '.....<br />
<br />
Josie was a big help she talked to them about things I didn't understand and when I needed it held my hand..<br />
First the social worker, neurologist, geneticist then psychiatrist ....honestly the last one was the hardest .<br />
There is no cure I may go loopy or not ....<br />
I guess I need to even more than I did before be in the now...I'm on the waiting list for assisted living not exactly where I thought I'd be at 60 ...tho I hope that I don't need it and they say 'well you are a miracle you just stay in that condo.'<br />
that's what I hopekathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com3tag:blogger.com,1999:blog-136079599904875983.post-19186038035098546222011-10-25T17:35:00.001-07:002011-10-25T17:35:38.127-07:00my smart daughtersone fixed my blog site and the other is taking me to the Huntington's disease clinic which from now on will be known as the HDC ..<br />
a little nervous scared of the unknown <br />
<br />
I think we have 4 appointments tomorrow<br />
<br />
<br />
thanks for the humming birds Jenny..<br />
<br />
<br />
kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com0tag:blogger.com,1999:blog-136079599904875983.post-51057051269717136302011-10-22T16:33:00.000-07:002011-10-25T17:25:02.519-07:00Huntintons disease and eye liner...I think I really must be losing my marbles along with my driver's license - I have Huntingtons not Parkinsons.<br />
For one thing you hear more about P than H and I guess I was tired last night when I posted it .<br />
I had my daughter check and she didn't even notice anyhow having lots of pain today as well so will forgive myself.<br />
<br />
<br />
kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com0tag:blogger.com,1999:blog-136079599904875983.post-15879301058700443542011-10-21T21:52:00.000-07:002011-10-25T17:25:42.694-07:00my first blogMy dear friend Louise and my Dr suggested I start a blog about my new life with Huntinton's not sure why but given this a new diagnosis( a week ago) and I'm still reeling and feeling confused.<br />
Maybe they know I like to talk but will anyone hear this out in computer land?<br />
I am no longer allowed to drive and I am only 60 - so much for visualization - I had this idea of me in my 70's and 80's with a convertible, blasting Celtic music on the cd player, lavender nail polish.<br />
I have to sell my car now- get a little scooter thing I can take into grocery stores geez.<br />
Of course before I knew what was wrong I was driving my car into a lot of well sidewalks and pillars so I should have known I just thought I was a lousy driver.<br />
That's why I can't take a photo of it for Craiglist too many scrapes including the indent of someones license plate.<br />
I told my daughters and I told my friends, family and Dr---I will get through this will all the love I'm feeling from everyone, cups of tea, my knitting, my books, music ...<br />
I used to play guitar, perform, teach guitar sell real estate and I had to quit all that because of this crazy pain I have and folks I thought at least when I got this diagnosis last week I'd be finally have an answer to the pain but it's not even remotely connected.<br />
One of my friends says she understands finding out I have Huntington's and she sees how strangely I walk she said she know how upset I am as she felt the same way when she found out she couldn't wear high heels anymore because she has arthritis in her feet and she is 70!!!!<br />
I was steaming !<br />
The day I was diagnosed on the way home from UBC I was drinking a beet juice and thinking to my self why am I drinking beet juice , why do I try to do yoga and walk and eat well and make myself look nice and put eyeliner on and so on to find myself with this at the age of 60.<br />
My daughter came over that night and held me I still haven't really cried yet..much.<br />
My daughter and I went to our Dr the next day I said the same to her what the heck is the point of taking care of yourself if this happens ? What is the bloody point?<br />
I'm still confused but did go see my dr again yesterday I told her as long as I wear eyeliner that means I have the will to live<br />
anyhow don't really know how this works<br />
Kathkathhttp://www.blogger.com/profile/13765741802714320432noreply@blogger.com0